Letchworth mum with MS speaks out about absence of information at point of diagnosis

Helena Jidborg Alexander and her two sons.

Helena Jidborg Alexander and her two sons. - Credit: Archant

A Letchworth mother-of-two with multiple sclerosis has spoken about how confused she was by the absence of information at the point of her diagnosis.

The latest Making Sense of MS report commissioned by the Letchworth-based Multiple Sclerosis Trust has revealed that as few as 12 per cent of sufferers are given the information they need at the time of diagnosis – leaving the majority struggling to make sense of their condition.

Helena Jidborg Alexander lives on Letchworth’s Grange estate with her two sons and works for the charity.

She was diagnosed with MS seven years ago. She said of her experience at the time: “The worst thing was the time it took between being told I had MS, at the end of February, and getting to see the MS nurse, at the end of April.

“During this time I had so many questions I wanted answers to and didn’t know where to turn. I was left with more questions than answers.

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“If I had been given a pack of information to read in my own time this would have helped to prevent the uncertainty and worry about my health going downhill.”

Around 100,000 people in the UK have MS, with more than 5,000 diagnosed each year – the majority of whom are in their 20s and 30s.

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The report also found that 72 per cent of people with MS would have been less stressed if they had been given the right information when diagnosed.

The Trust has produced a new 20-page postcard-sized introductory booklet to help patients by answering the most commonly asked questions at the point of diagnosis.

Consultant neurologist Dr Ben Turner said: “Providing just the right level of information for patients is hard, as everyone is different.

“This new resource is excellent – simple, clear and personal. It helps people avoid reading anything upsetting or information that they are not ready to read.

“The resource has been developed with the patients themselves and allows people to pick and choose what they want to find out about, digging deeper about the areas that are most relevant to them.”

For more information visit www.mstrust.org.uk/sense.

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